How public involvement led the project to focus on the mental health needs of carers

Summary

Dr. Clarissa Gibble discusses her research on dementia care inequalities and the impact of COVID-19 on carers' mental health. She highlights the importance of involving public stakeholders in research through the Liverpool Dimension Aging Research Forum. Her current project, funded by a career development award, investigates the unmet mental health needs of unpaid carers for older adults with and without dementia, emphasizing the need for equitable access to mental health support.

Takeaways

• 🎓 Clarissa Gibble, a senior research fellow at the University of Liverpool, focuses on inequalities in dementia care and aging, particularly after diagnosis and on an international scale.
• 🌟 Gibble is passionate about embedding equality in research and involving people with lived experiences, as well as non-academic professionals, in the research process.
• 🏆 She received a career development award from the Three Schools Mental Health to involve the public and stakeholders in meaningful dementia research.
• 🧩 The award supports an 18-month project examining the unmet mental health needs of unpaid carers for older adults with and without dementia, combining with additional funding from the University of Liverpool.
• 💡 Gibble established the Liverpool Dimension Aging Research Forum to connect experts and co-produce meaningful research, with activities including webinars, journal clubs, and conferences.
• 🤝 The forum's second aim is to educate and raise awareness about ongoing research and existing services that may be unknown to some.
• 📊 Gibble's research includes a study on the impact of COVID-19 on social care for people with dementia, highlighting the deterioration of patients and the burden on unpaid carers.
• 🏥 A separate study focused on safe care home visitation during the pandemic, revealing the distress and challenges faced by both unpaid carers and care home staff.
• 🔄 The pandemic has led to increased levels of mental ill-health among unpaid carers, with relationship breakdowns between carers, residents, and care home staff.
• 🌐 An international systematic review found the pandemic has negatively impacted the mental health and well-being of carers, emphasizing the need for support.
• 🔍 Gibble's current study, with the help of public advisors, aims to develop a support intervention for unpaid and paid carers through co-produced workshops and interviews.

Q & A

What is the main focus of Clarissa Gibble's research?

Clarissa Gibble's research primarily focuses on inequalities and inequities in dementia care and aging, examining what happens to people after a diagnosis and how to address these inequalities on both national and international scales.

What is the Liverpool Dimension Aging Research Forum and what are its aims?

The Liverpool Dimension Aging Research Forum is an initiative set up by Clarissa Gibble to connect lived experts, care providers, academics, and students to co-produce meaningful research. It also aims to educate and raise awareness of ongoing research and existing services.

What types of activities does the Liverpool Dimension Aging Research Forum organize?

The forum organizes public webinars, monthly journal clubs, regional networking meetings, and an annual conference to facilitate discussions, share services, and generate new ideas for research.

What was the impact of COVID-19 on social care for people with dementia according to the research mentioned in the script?

The research indicated a faster deterioration of people living with dementia, increased care burden on unpaid carers, and a significant impact on mental health due to reductions in social care usage and social support during the pandemic.

How did the pandemic affect the decision-making of unpaid carers regarding paid home care?

The pandemic led many unpaid carers to face difficult decisions about whether to continue having strangers come into their loved one's home for care or to take on those additional care duties themselves, due to concerns about the virus being brought in by external staff.

What was the role of public advisors in the research projects mentioned in the script?

Public advisors, including people with lived experiences and professionals, played a crucial role in shaping research projects, co-authoring research, and providing insights into what matters in the context of dementia care during the pandemic.

What are the key findings from the survey conducted as part of the community-based research on dementia care during the pandemic?

The survey found that reductions in social care and social support services were linked to higher levels of anxiety in people living with dementia and poorer levels of mental well-being in unpaid carers.

How did the pandemic affect visitation rights in care homes according to the script?

The pandemic led to various types of visits being enabled under limited circumstances, such as window visits, garden visits, and end-of-life care visits. However, there was a lack of clear guidance on safe visitation, causing frustration and relationship breakdowns between unpaid carers, care home staff, and residents.

What is the current project funded by Clarissa Gibble's career development award?

The current project, funded by the career development award, focuses on the unmet mental health needs of unpaid carers for older adults with and without dementia, aiming to understand barriers and facilitators to equitable access to mental health support for carers.

What is the approach to involving the public and stakeholders in the current research project?

The approach involves conducting interviews, focus groups, and co-production workshops with unpaid and paid carers, as well as care providers, to ensure that the research is heavily co-produced and addresses the real needs and experiences of those involved in dementia care.

What are the next steps for the current research project after data collection?

The next steps include analyzing the data jointly with public advisors, conducting focus groups, and organizing co-production workshops to co-produce a funding application for developing a support intervention for unpaid and/or paid carers.